Rare Voices Australia

September & November 2013 e-newsletter issues

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Go their website http://www.rarevoices.org.au/ to learn more about any of the items below.


In the September issue:

  1. National Rare Diseases Plan
  2. Life Saving Drugs Program (LSDP) Post Market Review
  3. RVA and Pharmaceutical Industry 3rd Round Table Meeting 26th August 2013
  4. ‘Don’t Stop Research on Rare Diseases’ – an International Campaign
  5. Western Australian Supporters Living With A Rare Genetic Condition – GSCWA
  6. The Forgotten Ones Project
  7. Research News – Congratulations Professors Steve Wilton and Sue Fletcher!
  8. Rare Disease Mouse Models Available From The Australian Phenomics Facility
  9. RVA Australian Experiences in Living With A Rare Disease
  10. RVA and NZORD Strategic Partnership MOU
  11. NHMRC joins IRDiRC.

In the November issue:

  1. National Rare Diseases Plan – AHMAC Decision
  2. National Plans for Rare Disease in Europe
  3. RVA and CORD Partnership
  4. Life Saving Drugs Program (LSDP) Post Market Review
  5. IRDiRC Research News
  6. RVA Office – introducing Amy!
  7. Survey to Register Interest – Rare Disease Symposium 2015
  8. International Rare Diseases Day

Upcoming Events – 2014 Rare Disease Day Events!

If you have an event you would like to upload to RVA E News please prepare no more than half-one page and email to [email protected] FEBRUARY Rare Disease Day Events
If you have an event you would like to share with RVA supporters, please email us at [email protected] Please submit your information by email and listing information such as; Name of event, date, time, venue, organiser and organisation name, email and phone contact and link to the organisation’s website.

Canberra – Parliament House
RVA will be repeating its Parliamentary event in 2014 inviting Senators and Ministers to learn more about the needs of the 6-8% of Australian population affected by rare diseases.

Queensland – Wesley Hospital
RVA is pleased to announce we will coming to Queensland for Rare Disease Day on Friday 28th February 2014. We would love to see as many of the rare disease community as possible attend this event.
If you would like to attend the day please contact RVA.

WHEN: Friday 28th February
WHERE: Wesley Hospital Brisbane
451 Coronation Dr, Auchenflower QLD 4066
TIME: 12.00-1.30pm
VENUE: Auditorium
COST: FREE! Includes cut lunch and refreshments
RSVP: RVA Office; [email protected]




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